i just needed 2 vent. i've been living with lupus and polymyositis since 1994. i've had ups and downs. but since 2003 i've been more down than up. it has gotten so bad that i don't go anywhere anymore. simple trips to the store are few and far in between.

it's gotten so bad that i had to get a wheelchair. i'm only 32 and i'm really not looking forward to this. i know it'll give me more freedom and independence but let's face i'm 2 young.

i just needed to say this here because the people around me don't understand. my self-esteem and confidence was already in the ground now the thought of rolling everywhere is not neccessarily a pleasant one. i worry about meeting someone that can accept me. i don't want to spend the rest of my life alone. but the reality is that there already aren't enough men and most can't deal with sickness.

let me stop cause i'm going off. anyway bye 4 now
nicole

lupusgirlstefanie

10-29-2006, 12:24 AM

Hey Nicole

I am so sorry this is happening to you. I understand about the wheelchair. I was in a wheelchair last winter when my arthritis was so bad and I agree wtih you we are way way to young for this (i'm 22)

Right now i'm with a cane and already I can feel my legs giving out under the pressure so my wheelchair is waiting for me. I know mine isn't the same since as soon as the warmer wheather comes I can walk, but i know with my RA it's not long before I'm relying more and more on the chair instead of my legs. Thats lupus and that's RA for you.

Is it more because of pain that you cannot walk or is it numbness?

Mine is more of the pain so usually in the winter the pain is worse that's why i have my chair.

I do hope you feel better soon

feel free to PM me anytime i do understand and I know LUPUS SUCKS!!!!!!!!!!

take care

cnlb2005

10-30-2006, 06:21 AM

u sound a little like me. in the summer i fair a little better. but since 2003 i've increasingly been getting worse even in warm weather.

i've been using a cane since 1996 anyway but this chair, UGH.

i'ma live though. i guess i have no choice

thanks 4 listening
nicole

stjames13

10-30-2006, 07:51 AM

NICOLE,
I am sorry to hear you feel that you will be alone due to being in a wheel chair.

WELL YOU WON'T.....and if the people you know are that SHALLOW then they were never your friends anyway.

MAY I suggest that you find a LUPUS SUPPORT GROUP near you and go there and make some friends.....then they will at least be in the same boat and understand how you feel.

I am ISOLATED as much as you but mine is due to on top of having LUPUS and many other auto immune problems I have a broken neck and back.

I have gone from a cane, to a walker and am now facing a wheelchair.

Though some may look at it as some kind of sentence to not being able to get out but many car manufacurers CHRYSLER for one gives you up to 3 thousand dollars to have you vehilce equpipped with special gear that will make it easy for you to put you chair in and to get it out.

You CAN and WILL be as INDEPENDENT THEN AS YOU ONCE WERE.

I HATE BEING ISOLATED.....when it gets me down I play my guitars.....you need to find a hobby that you can do that will keep your MIND in search of new and exciting things.

You CAN still go on VACATIONS, CRUISES and have a normal life.

PLEASE do not let this make you feel even MORE ALONE.....use the chair as a TOOL to get the he11 out of the house and go to the mall and have some fun....sure it will take some time to get used to but I am sure it will improve the quality of your life.

You can get GOOD seats to concerts and shows if you are wheel chair bound......you can still be a loving woman, mother, as you are a HUMAN BEING and if someone looks at you and sees only the chair then they have MORE PROBLEMS than you and I put together. :wink: :wink:

If ya wanna talk please feel free to email me at STJAMES13@GMAIL.com

I hope you feel better soon and I look forward to hearing from you !!!!

STJAMES 8) :wink:

ganesha

11-13-2006, 01:20 AM

Nicole,
I can relate somewhat, as I have been paralyzed and using a wheelchair for almost 7 years. I was also diagnosed last year with Lupus and likely nephritis. I am fortunately fairly strong and able to be pretty active in my wheelchair, except when my Lupus flares up. Then I dont go much of anywhere until my spirits return. So your situation is a bit of a reverse and for different reasons, but I had many of your same fears back then. Heck, I have them now with the Lupus addition. But in my 7 years of injury I have been approached my many girls in public (I am a male:) and have had very wonderful relationships with a few of them. I have now been dating someone for 3 1/2 years that approached me after I talked to her massage class about living as a disabled person. And this is after she knew all my dark disabled secrets of not being able to fully control my bowel and bladder and other similar intimate details.

I truely believe life is not about what happens to us, but the grace with which we deal with all that comes our way. On a first date once, I had an involuntary bowel movement at a movie, and sat through 45 minutes knowing what had happened, but mortified to say anything. When we left I informed her of my situation, so she drove me home, waited while I changed, and we continued to date for a little while. My calm attitude and honesty was what was more important to her. Life and love are not over, but you must find happiness within yourself that you can then exude to others, and some will see the beauty in you no matter what.
Good luck
Peace
Brent

cnlb2005

11-14-2006, 10:50 AM

:) i want to thank you all 4 your words of encouragement. i'm taking it day by day and praying for the mental, emotional, and physical strength to make it through.

thanks
nicole :)

Quickmelt

12-08-2006, 07:16 AM

Hi Nicole!

Just hang on there and feel free to vent all you like :)

I was also in a wheel chair for almost a year, when I was first diagnosed with Lupus and I was only 24yrs old then. It sucks and I know the terrible feeling, just hold on and put in mind that God has reasons for everything that happens and just be strong because He's not gonna give you something you can't carry on.

Smile :)

bthny10

12-19-2006, 12:26 PM

If someone will not accept you for who you are, you don't need them.
After I began using the wheelchair (when I was twelve) I found out who my real friends are. It was painful, but for where I was at, it was necessary.
I know how hard it is. It's hard to see my fifteenth birthday come and go without a huge difference. God has shown my a lot throughout everything that has happened to me. He's totally in control.

I will pray for you.

-Bethany

Kokopelli

01-12-2007, 08:29 PM

Granted, I'm not the one sitting in the wheelchair, but try to make the best of it. When my mom got her first scooter (she wouldn't do a chair)...I put Harley stickers all over it. She thought it was the coolest thing.

Her chair now has small "bumper" stickers on it...things like "I'm not spoiled! I'm not I'm not!!" I try to make things fun for her...even when they may not be.

The thing is with Lupus, it doesn't care about age, gender, race, creed, religion....it sucks no matter who you are. And I know it sounds cliche', but a positive attitude will take you far with Lupus. My mom was diagnosed about 28 years ago and she refused to let it control her life. I know it's easier said then done and especially since I'm not the one with it...but those words are from my mom. She always said that someday it was going to win, but it had to catch her first.

littlered

01-12-2007, 08:48 PM

do not despair. You are still YOU. How you get around is beside the point...as long as you DO get around.

I use a cane when the weather is warm; when it's cold I must use a walker because I am more stable that way. If/when it gets to the point where I use a wheelchair, I am sure I will feel much like you do. But it sounds like you have handled so much already with dignity and grace that you WILL find a way to see this through.

I havefaith in you. Chin up, sweetheart! With love, Kathy

mnjodette

01-13-2007, 12:25 PM

One of the best demonstrations of grace in the face of adversity that I ever saw was a woman that I trained with to do diversity workshops. She was blind and used a wonderful guide dog. Sheri had such dignity about her, which would've been enough to inspire respect from those around her. But what was so amazing was her sense of humor. We would be doing a training somewhere and she would randomly point to someone in the group (and I mean randomly!) and say in a challenging tone, "Hey, I saw that!" Everyone would break up. She had a million little lines like that, and it went a long way to making people relax about her disability. And, she was very powerful at teaching about accepting diversity! My point is who you are is a product of all of the experiences and influences in your life -- even the bad, painful or negative ones. I've always though that we're all a kind of tapestry, woven of lots of different kinds of threads. Being sick, using a cane, a wheelchair, a guidedog can be something that holds us back, or we can just look at it as one of the threads in that tapestry. If someone else views as less of a person because of that, we can just smile and walk (or roll!) away - the loss is theirs! Hang in there...I think we're all special.

MARYCAIN

01-13-2007, 01:04 PM

Nicole, don't ever let being in a wheelchair stop you from going anywhere you want to go, or being the person you dream of being. You are a whole person, not a collection of parts - just because a couple of parts don't work like everyone else's, it doesn't make you defective, or less of a person. And it doesn't close the door to a loving relationship with a special person - look at Joni Eareckson Tada, who met and married her husband AFTER she broke her neck in a accident and became a quadriplegic. Or my wonderful friend Ron, who lost both his legs in a mining accident, fell in love with one of the nurses at the rehab center, and got married. His wheelchair didn't stop him from being a husband and father - mine doesn't stop me from being a wife, a mom, or anything else I choose to do. But in the end, it has to be your choice, stay at home and feel isolated and alone, or find out what services are available to you, take advantage of them, and go out and face the world with your head held high. The secret to being liked and accepted by other people - you have to like and accept yourself first. If you are comfotable with your wheelchair, other people will be too. After a while, they will notice YOU, not the chair.

littlered

01-13-2007, 03:32 PM

Hear, Hear, MaryCain....I couldn't have said it better myself!! *applause*